Cystinosis Ireland warmly welcomes the Cabinet approval of the Human Tissue Bill which will pave the way for soft-opt out organ donation. Organ (specifically kidney) donation is a crucial element of therapy for people living with cystinosis and is life-saving.  The Government is also committed to supporting awareness and understanding of organ donation and its importance, with the aim of increasing the numbers of organs donated each year.

Cystinosis Ireland is a member of the Irish Donor Network, a network of patient advocate organisations, which has campaigned for many years for this legislative change.  Soft opt-out is the standard in many European countries including England, Scotland and Wales, and has the potential to greatly increase the numbers of donor organs available.  Next of kin will be fully consulted before donation. The Bill will also provide a framework for altruistic living donations, particularly relevant for those waiting for a kidney transplant.

“At the end of June 2022, close to 400 people were on the waiting list for kidney transplant*, an important therapy for cystinosis patients. This Bill has the potential to change the lives of those patients,” said Mick Swift, chair of Cystinosis Ireland.

Cystinosis Ireland looks forward to the passage of the Bill through the Oireachtas at the earliest opportunity.